I Live With Hemophilia — And So Does My 12-Year-Old Son

Tap. Tap. Tap. When Danielle Nance's parents answered the knocks at their front door, they were shocked to see the team standing in front of them: Child Protective Services.

It was the 1970's and Danielle, then just an infant, had developed a curious amount of bruises from everyday activities. Her parents were able to convince CPS that Danielle was not living in an abusive home, but they were embarrassed — and desperate to understand what was wrong with their baby.

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When Danielle turned 2, the mystery was finally solved: She was diagnosed with hemophilia A, meaning her body carries a very low amount of a protein called factor VIII (eight) that helps blood clot normally, which can result in excessive bleeding and bruising even after a minor injury, like bumping into the corner of a table. Not only is the condition extremely rare — with just 20,000 cases in the U.S. — but Danielle is one of the 30% of patients with no family history of hemophilia, so the news came as a surprise.

There are only 20,000 cases of hemophilia in the U.S.

As the years passed, Danielle grew up in constant pain. Once, a fall off a teeter-totter at the playground caused a bleed into her knee joint that took weeks to heal. Sometimes putting pressure on an injured area would hurt so badly that she'd have to stay home from school.

Sometimes, a bleed meant she had to be rushed to the hospital for life-saving treatment. When Danielle was 4, she jumped off the top of her bunk bed and hurt an ankle. Blood pooled under her skin and into the joint, causing severe swelling.

Her parents made the frantic three-hour drive to the nearest hospital, where she got an injection of factor VIII. The treatment helped her ankle heal, but in the late 70s, this type of therapy was a lot riskier than it is today and it infected her with hepatitis C.

"My mom says I turned yellow and mostly slept for about a year, which are common symptoms of hepatitis C," says Danielle, who is now 44. After that traumatic experience, her parents were hesitant to give her more treatment.

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Danielle with her children, Isaac, 12, and Serena, 16.

Courtesy of Danielle Nance

"Kids in the neighborhood would call the bleeding grossand wouldn't let me play with them, which really affected my self-esteem," Danielle says. "It made me worry about my future, like how would I attract a successful mate? Why would they want to be with me? I'm going to be a burden."

Her confidence continued spiraling downward into her teen and early adult years, during which time Danielle struggled with depression and eventually dropped out of college. "Doctors told me the average lifespan of a person with hemophilia was 30; it was lonely because I didn't know anyone else who had hemophilia," she says. "My parents felt too ashamed to discuss it, and there was no internet, so as a result, I made some really poor choices."

Danielle's turning point came after she ended a bad relationship. Her boyfriend at the time had become verbally abusive, and one day, he hit her on the arm. Hard. "It caused this big bruise, and it was a wakeup call that I needed to break up with him," she says.

Danielle re-enrolled in school at 22 years old, and started volunteering at the National Hemophilia Foundation. "For the first time, I had somebody who knew about hemophilia," she says. "It went from something to be ashamed of to the greatest strength of my life." She went to medical school to study hematology and is now the medical director at the Arizona Bleeding Disorders Health & Wellness Center, where she helps others who have conditions like hers.

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It went from something to be ashamed of to the greatest strength of my life.

By the time Danielle reached her late-twenties, she decided she was ready to have children; however, some doctors advised her not to because of all the unknown risks. She knew she was facing a 50% chance of passing the disease along to her baby, but she was determined to become a mother. With the help of her hematologist and a high-risk obstetrician, she had one daughter, Serena, who is 16 and healthy. Her son Isaac, who is now 12, was born with hemophilia too.

"It's not the greatest thing in the world, but I can live with it," Isaac says, who describes his childhood as normal. This is largely due a significant improvement in treatment over the last four decades. There is no longer a risk of contracting serious diseases like hepatitis C or HIV during treatment, for example, because the protein factor needed for injections is now made in a lab, not received via human donors.

Danielle and Isaac still have to live with constraints. Isaac can't play full-contact sports, such as football. Danielle has to take a pill whenever she's menstruating to limit bleeding. They both have to be careful when taking certain over-the-counter medications like ibuprofen, aspirin and naproxen, all blood thinners. And they both have to make time for intravenous injections of clotting factor at home two to three times a week to prevent excess bleeding.

Fortunately, a cure may be on the horizon. There's a type of gene therapy that has shown promise in clinical trials. Scientists are learning how to insert a gene or fix a broken gene in a person's body that will enable him or her to start naturally producing the proper amount of clotting protein that he or she had been missing in the past. And a new prescription medication called Hemlibra was approved by the FDA on November 16th, 2017. It's designed to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A with factor VIII inhibitors.

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When Danielle thinks back to the intense suffering from her childhood and then thinks about all the scientific advancements that she has seen in her lifetime in terms of hemophilia treatment, she is excited. She, of all people, knows what an extreme difference they can make in a person's physical and mental health. "Hope is the greatest of human emotions, that ability to see past things that are sad, frightening, or painful and look toward the future," says Danielle. "With hemophilia, one thing we do have is an extraordinary amount of hope."

Jane BianchiJane Bianchi is a writer and editor with more 13 years of experience specializing in health; she formerly worked as a health editor at Family Circle, and her work has appeared in Men’s Health, Women’s Health, Esquire, and more.

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